Who’s keeping an eye on ‘brains at risk’? The FAQs

What 3 top priorities can dementia services in developed countries focus on?

  • Prevention
  • Early interventions
  • Researching a cure

Has the clinical community caught on to this?

The public may want earlier interventions, clinicians are still divided. For many, this remains controversial.

Meanwhile, the ‘gold-standard’ American diagnostic criteria have reclassified Alzheimer’s disease (28 years since their first issue) into 3 stages:

(1) Pre-Clinical Dementia: brain changes predate symptoms

(2) Mild Cognitive Impairment (MCI): early enough to be noticed but too mild to be named dementia. MCI is a state not a disease. Some ‘convert’ to

(3) Alzheimer’s dementia

NHS dementia services only address stage (3)!

Why is prevention and earlier intervention important? 

  • Identifying ‘brains at risk’ in middle age may yield strategies to forestall conversion of MCI to Alzheimer’s disease, and
  • Early identification = advance planning = choice = autonomy + savings = quality care.

So are we there yet?

As we await disease modifying treatments, we are refining our grasp of

  • Biomarkers: various clinical and lab tests to predict MCI/Alzheimer’s dementia, like scans and lumbar punctures.
  • Risk Factors: and a range of lifestyle, social and clinical Interventions to manage brains at risk.

What about all the bad press?

The potentially stigmatising effect of “pre-dementia” can be offset by the empowerment of an early diagnosis and disease control. It is our focus on later stages which may be perpetuating negative perceptions.

Surely telling someone they have MCI causes unnecessary anxiety and depression?

Not everyone wants to know. However, the opposite can also be true. Disclosure, to many who suspect something is amiss can relieve anxiety and extend choice.

What evidence is there that this works?

Some evidence supporting the benefits of controlling high cholesterol, high blood pressure and various lifestyle modifications like eating healthily, taking exercise, smoking cessation and avoiding hazardous alcohol consumption in middle age. This approach successfully reduced the prevalence of heart disease in the UK. We know that intellectual stimulation, the right diet, good control of diabetes and depression may reduce the incidence of dementia. Protective factors include active lifestyles, social connectedness and mental resilience.

Some innovations like the productive ward were piloted without ‘evidence’, and it is through refinement of prototype that made them so successful. Lack of ‘evidence’ does not mean evidence of absence of an effect.

Meanwhile we await 3 European Alzheimer’s dementia prevention trials underway in Finland, Holland and France to announce results in the near future.

How much is needed to invest in identifying and targeting brains at risk?

Many prevention platforms already exist within the NHS e.g. Health Checksprimary care liaison workers and a sub-type of cognitive behavioural therapy (CBTplus), developed within the ‘Take Heart’ service, probably the only MCI service in England.

Might this save money?

Considerable savings projected though not instantly.

Estimates based on unpublished health-economics assumptions suggest £230m savings in 10 years (England & Wales) and £3.8b by 2033 (a fifth current spend on Dementia).

There’d be no wisdom in ignoring this. Whichever way you look, dementia is on the increase (longer lives, worse lifestyles & pressure to increase woefully low detection rates).

Where is this all going?

Digital apps and telehealth will complement ‘human’ services.

MCI-friendly and dementia-friendly zones…including your local gym, supermarket, school, pharmacy.

Proactive and portable expertise closer to home, promoting wellbeing and optimal ageing.

Alzheimer’s disease will stay ‘invisible’ for decades before we see it. Measuring and protecting mental capital should be an option open to you and me!

It’s all about choice!

@KarimS3D

Pioneer school leads the way in transforming dementia public awareness

People with dementia and their carers face a significant lack of understanding cutting right across public services and society.

Two thirds of people with dementia in the UK never receive a specialist diagnosis. That is over half a million tax payers, together with their carers, unable to access the help they need for a terminal illness.

Those that do receive a diagnosis can experience social exclusion mostly due to stigma, ignorance and lack of awareness.

Two misconceptions fuel this:

  1. Dementia is a normal part of ageing
  2. Nothing can be done about it

Some three years ago, my team at NHS West Midlands decided to tackle this by producing a free online resource (see nhslocal) to raise awareness of dementia in secondary school. After 60 minutes pupils should be able to understand:

  1. what Dementia means
  2. the challenges faced by carers
  3. innovative assistive technologies and their applications

Younger people are more keen to know about dementia than older people are. The school curriculum  supports learning about relationships and loss, illness and wellbeing, caring and compassion. Find out more on why raising dementia awareness in school is so valuable.

Because Dementia is an exemplar condition to introduce to schools, our model is now incorporated into the Prime Minister’s Challenge on Dementia under Angela Rippon‘s Leadership. Over 20 pioneer schools across England are rolling this out as one of many ways to start a conversation about dementia in primary and secondary schools.

I was privileged to attend the final lesson on Dementia at Swanshurst School, Birmingham (thanks to BBC News for allowing me to share their footage on my blog).

14 year olds were so well briefed, they were inquiring about dementia subtypes e.g. Lewy Body Disease. They boasted an awareness of the latest Design Council award winning assistive technologies. Their questions suggested a good grasp of the link between wellbeing, lifestyle, heart and brain .

Mission accomplished!

Undoubtedly a successful collaboration, and all credit to the teachers involved who provided dynamic leadership and unwavering belief in the vision, sufficient to make it work.

Our pioneer schools can support a case for a brief focused intervention that sows the seeds of a sustainable dementia friendly society.

Small actions can have large consequences.

Let’s stop graduating any more generations ashamed of the D word!

@KarimS3D